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Barriers to accessing public cancer genomic data
Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to term...
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group UK
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586850/ https://www.ncbi.nlm.nih.gov/pubmed/31222016 http://dx.doi.org/10.1038/s41597-019-0096-4 |
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author | Learned, Katrina Durbin, Ann Currie, Robert Kephart, Ellen Towle Beale, Holly C. Sanders, Lauren M. Pfeil, Jacob Goldstein, Theodore C. Salama, Sofie R. Haussler, David Vaske, Olena Morozova Bjork, Isabel M. |
author_facet | Learned, Katrina Durbin, Ann Currie, Robert Kephart, Ellen Towle Beale, Holly C. Sanders, Lauren M. Pfeil, Jacob Goldstein, Theodore C. Salama, Sofie R. Haussler, David Vaske, Olena Morozova Bjork, Isabel M. |
author_sort | Learned, Katrina |
collection | PubMed |
description | Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients. |
format | Online Article Text |
id | pubmed-6586850 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Nature Publishing Group UK |
record_format | MEDLINE/PubMed |
spelling | pubmed-65868502019-06-24 Barriers to accessing public cancer genomic data Learned, Katrina Durbin, Ann Currie, Robert Kephart, Ellen Towle Beale, Holly C. Sanders, Lauren M. Pfeil, Jacob Goldstein, Theodore C. Salama, Sofie R. Haussler, David Vaske, Olena Morozova Bjork, Isabel M. Sci Data Comment Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients. Nature Publishing Group UK 2019-06-20 /pmc/articles/PMC6586850/ /pubmed/31222016 http://dx.doi.org/10.1038/s41597-019-0096-4 Text en © The Author(s) 2019 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Comment Learned, Katrina Durbin, Ann Currie, Robert Kephart, Ellen Towle Beale, Holly C. Sanders, Lauren M. Pfeil, Jacob Goldstein, Theodore C. Salama, Sofie R. Haussler, David Vaske, Olena Morozova Bjork, Isabel M. Barriers to accessing public cancer genomic data |
title | Barriers to accessing public cancer genomic data |
title_full | Barriers to accessing public cancer genomic data |
title_fullStr | Barriers to accessing public cancer genomic data |
title_full_unstemmed | Barriers to accessing public cancer genomic data |
title_short | Barriers to accessing public cancer genomic data |
title_sort | barriers to accessing public cancer genomic data |
topic | Comment |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586850/ https://www.ncbi.nlm.nih.gov/pubmed/31222016 http://dx.doi.org/10.1038/s41597-019-0096-4 |
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